Scleroderma: Grazia’s story, Italy

By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /

I noticed my hands became blue and a friend of mine who is a doctor advised me to make a check up I discovered I had Scleroderma The first question I asked the Doctor was; I have two children – how long shall I live? She told me Scleroderma is not a disease with a short period of life I could see my children grow up I developed Scleroderma when my first boy was 12 or 13 and the second one was 3 or 4 years and so I tried not to involve them but it was impossible; they saw what was happening around them I decided to do my best not to make them suffer from my situation everyone of us in my home had a normal life – we didn’t change our habits now the first one is 34 and the second one 25 and we still have a normal life in my family we are calm and not scared about me I am not the centre you know – well, maybe I am the centre but not, not Scleroderma, Scleroderma is not the centre of the family At the beginning it was difficult to accept Scleroderma then I decided not to see it as an enemy but as a part of me – as a part of my life When I have pain or when I can’t open a jar for instance or when I can’t do steps of course I must think about it but just for a moment because I don’t want to think about it any longer I want to do whatever I want, I want to live I realised I had something in my lungs because I couldn’t do the same things I did before For instance I used to go to the mountains hiking and now I can’t do as I did before, but I take my time and I do, the best way as possible for me My boys and my husband must wait for me but it’s nice to do something together, with different ability but to do this together

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